This blog shares the daily life of a family living with two Type 1 diabetics.

Welcome

I'm the mom of a beautiful Type 1 daughter and married to a wonderful husband who also has Type 1! This blog serves as a place for my thoughts and feelings, in the hopes that it will help other families struggling with the many challenges diabetes presents. I can't always promise it is uplifting...but, it is honest.

And, of course, it is by no means meant to offer medical advice.

Thursday, December 20, 2012

I've been reminded of an important lesson this month. Take the Bird's Eye View.

After a long period of absolutely amazing blood sugars, this past month brought numbers more out of control than I have ever seen. None of our tricks worked. We increased her insulin by insane amounts and still she remained high. I experienced frustration unlike any I have known, and a sense of helplessness for the first time since her diagnosis. I finally called her amazing health care provider, who of course was...you guessed it....amazing. Her first question was "what's going on over there?" She, too, was surprised by how much Jess's insulin requirement had jumped. Her theory was a combination of growth and that the honeymoon was definitely over (the period of time when Jess still makes some insulin on her own, before complete pancreatic death). I had actually thought that this had happened awhile ago, but based on all the equations of insulin needs, etc it seems to have now happened. Luckily, I already mourned this so there was actually zero emotional impact of her stating it. And, I was so incredibly relieved to have someone else help out. My confidence was shot, I was emotionally and physically drained, and I needed help. Not something at all easy for me to ask for, but I am getting better at it as life goes on.

Jess's healthcare provider made suggestions, and was available all weekend to help (she is truly hands down the best). Things are still not what they were a couple of months ago (and she's been sick this week which of course does not help!), but they are leveling out some.

But, all of the above is really just boring background. I realized this past month that I forgot a very important lesson. Even though diabetes requires so much of our time and energy, especially when it is completely out of control, we can not let it become our sole focus. I spent too much of this past month frustrated and upset. There were too many times I forgot to look past all the high numbers on the meter and see the beautiful little girl in front of me. I worried too much about the high sugars coating her vessels, and forgot to focus on the here and now. The tragic, absolutely devastating events of last week in Connecticut are a deeply painful reminder that none of us truly knows how long we have. And, although blood sugar control is important both to prevent short and long term complications, it is perhaps just as important to also focus on the here and now.

I realized this one night while sitting in amazing front row seats at the symphony. Jess is an avid piano player and had the perfect view of the guest pianist's hands. The absolute joy on her face throughout the evening was palpable. Her blood sugar was cruising along in the 300's and yet she clearly was experiencing true and pure joy. I couldn't help but sit with a crazy grin on my face the entire performance.

Although so easy to forget so much of the time, diabetes is but one facet of my beautiful, amazing daughter. And, when it decides to revolt and cause deep turmoil, I need to remember to take the Bird's Eye View. These high numbers will pass, but so will time. And, I will never get that time back. Jess will never again be 10 years and 4 months old.

So, perhaps what I have learned this past month is that there are many sneaky ways diabetes can win. We very carefully don't let it stop Jess from doing anything. We make sure she is as unaffected as possible by these rough times. But, she and we need more than that. We need to remember to focus on the great big wonderful enormity of Jessica, even when part of her decides to create havoc.

Sunday, December 2, 2012

This has not been a good week. Understatement of the year. Here's the kicker about diabetes. Just when you think you've got it down---an awesome HgbA1c, knowing the in's and out's of I:C ratios, basal rates, a pro at carb counting...out of nowhere diabetes sneaks up on you and beats you down. Apparently this time in the form of a pre-adolescent girl entering a major growth spurt. Her little body is spitting out all kinds of hormones making her insulin needs shoot way up. And, I mean WAY up. Despite bolusing her every two hours throughout the night and raising her basal rates faster than I ever have, I have been unable to beat these highs. Strangely, only at night. Her daytime numbers have been pristine. But, these hours are likely when she is spitting out the most growth hormone. I am exhausted, frustrated, and to be honest a bit scared. But, tonight I entered the night hopeful. I received some much needed advice from another T1 mom who has a child that has already been through this. She recommended a temp basal of +20-30%. Armed with new tools, I went to bed hopeful. An hour later I woke to check Jess and was greeted by the lovely 373 (and slant arrow up on the Dex to add insult to injury.) Sure enough, ketones. And, the pulled site revealed the dreaded kink. I wonder if I am the only parent who feels massive amounts of guilt when it is the site that I have placed that kinks. So, now I will wait for the ketones to clear and her numbers to come down and see what the night will hold. Just like any mom, I will watch over my sweet girl. And, I will take comfort in one of my favorite quotes: "Life isn't about waiting for the storm to pass. It's about learning to dance in the rain." No matter what kind of blood sugars this night brings, tomorrow is another day, and another chance to dance in the rain.

Blood sugars in the steady 200-300's despite waking every 2 hours to check and bolus, and adjust basal rates.

An exhausted Jessica even though she was able to sleep through most of the checks. Constant highs don't feel good. Note the "I Can Do It" bracelet.

Tonight, a kinked site. Site changes at 10 pm- no fun for Jess, or for mom who needs to stay up to make sure the ketones clear.

Nope- that site is not supposed to be shaped like an upside down "U." And, despite the fact that I know these things happen, the mommy guilt is there as I am the one that put in this sit tonight.

Saturday, December 1, 2012

This week has been yet another good reminder to me that patients can try their hardest, give 200%, and still not achieve the outcomes that physicians have been trained to desire.

On the surface, Jessica has had a "horrible" diabetes week. She's been in the 200s more than she hasn't. And, yet, I have had no sleep. I have worked my ass off trying to get her numbers under control. She has undergone extra site changes as I have had to rule out failed sites as a cause of these high numbers. In short, we have put forth extreme effort and have absolutely nothing to show for it.

Patients often drop off logs for physicians to review. It is so much about numbers. HgbA1c, LDL, blood pressure, weight. Yet, physicians can forget what is going on behind these numbers. Checking blood sugars is work. Trying to eat correctly is work. Exercise is work. Staying up all night multiple nights to try to achieve control is work. Even "just" remembering to take a pill every night is work. A patient can work incredibly hard, but a logbook filled with 200s will not reflect this. Is there any acknowledgement of this work?

Perhaps the patient who seems to have "given up" is just sick of expending so much work and getting so little positive feedback, or seeing no reward of their effort.

Tonight I was tempted just to sleep. I have had a ridiculously hard week at work, the husband is once again working nights on inpatient, and despite staying up all night I have not been able to get Jess's numbers out of the 200s. It would be so easy to give up. After all, living in the 200s won't hurt her much in the short term. It is so easy to see how this mentality can win. And, I have knowledge, drive, resources, support. What about the patient alone, or who can't afford the strips for repeated checks?

We're losing at this number game this week. It is not due to any lack of work. In fact I am so completely exhausted and frustrated that I am near tears. I secretly want to give up for a short while. I am close to diabetes burnout this week. We "should" be able to control this. The basal rates and ISFs "should" follow the rules. But, she's growing and so they are not. Human bodies are not perfect little experiments where all factors can be controlled. I am doing my absolute best, but her body seems to randomly be spitting out growth hormone or cortisol, or some other unmeasurable substance that shoots her blood sugars up. And, despite rage bolusing, multiple changes to her basal rates, and complete exhaustion on my behalf I am not any closer to achieving blood sugar control then I was three nights ago.

Yet again a good lesson in humility for me. Patients can work so hard behind the scenes. It needs to be acknowledged. Even if HgbA1cs and LDLs, blood pressures, and weights are not "at goal," it does not mean there has not been work.

Friday, November 16, 2012

I have often wondered what your days at school really look like. How do you do it? What does it really look like? I hear random bits. The girl that teased you, the test you had to take during recess, the pride when you know you made a good choice.

Yesterday I shared part of your day. Your school had classroom visits, and I sat and watched you like a fly on the wall.

I didn't know that you wear your diabetes bag on your back the entire day. I wonder if it is uncomfortable to sit with it on your back as you lean against your chair. I see you go to the front of the class to write on the Smart Board and it is there-on your back. As your mom, it seems to scream out "my daughter is different...she is not like the rest." I ask you about it at lunch and tell you that you could take it off and put it on your chair. "No, mommy- I want it on my back- I can't lose it there-it has everything I have to have." I realize this bag represents your safety. As long as it is on your back, you can take care of yourself. In a world that I don't think you fully trust to take care of you, you seem to know that as long as you have your bag, you will be ok.

I watch you check your blood sugar before the math quiz. You miss all the verbal instructions the teacher gives as you check. You smile as you hold up the meter to show me the "104." I remember you telling me how the teacher sighs if your blood sugar is out of range, and how much you hate giving up recess to take the quiz then. I find myself once again wondering if the right thing to do is really allow you to reach your full potential by not taking tests when your blood sugar is high. And, then I think what a ridiculous question that is.

I sit with you and your friends at lunch. I see their lunches. "See mom---see what they all have for dessert?" you ask as you hold up your one small peanut butter cup. I am so sad as I think "but their pancreases work, and if they eat these desserts they will still be able to learn well...while you will be in a hyperglycemic fog." I tell you I do see, and I promise to myself that I will try to give you a bigger dessert but realize that something else will have to go. Your friends may be able to eat a 100+ gram carb lunch, but we have seen time and time again that the best I:C ratio does not hold with high carb meals. I can't explain this to you. And, I shouldn't. But, I find myself hoping that someday you understand why your dad and I have done so many things.

And yet, I think you are happy. You hate diabetes most days. And, the lows and highs are relentless. You still fear pump and dexcom site changes. And, you do get teased. But, you also have found good friends. And, above all else, you are still just a ten year old girl.

I am so proud of you. Every single day. And, as I sit like a fly on the wall I almost tear up with this pride. I know deep in my heart that this is YOUR life story. I may have suitcases full of my own emotion and baggage about your diabetes, but they are mine alone. You are living your life and triumphing. I know diabetes has made you stronger and healthier than most your age. I see how much more empathetic you are towards others that also have their own diseases to manage. And, I know that because of diabetes you will do great, amazing things. You are my super hero, Jess.

Thursday: I rush home in between meetings to pick the girls up from school in order to get everything ready for the babysitter. I am greeted with Jessica visibly upset. "Get me out of here...I just want to go home." I quickly usher her out of the building. She is in tears before we reach the car. In the safety of the car, the floodgates open.

"They told me I couldn't finish my lunch. They told me I had to throw out my food. I told them I had Type 1 diabetes, and I needed to eat my lunch, but they wouldn't listen. My friends told them I had Type 1. She said she knew I had Type 1, but lunch was over and I had to throw out my food. Mom, I had over 30 grams of carbs left...I was afraid if I didn't eat it I would get so low I would pass out." More tears. "I was so scared, mom."

Jessica stood strong. She refused to throw out her food. And, so, the lunch aid went to her teacher.

Luckily, her teacher handled the situation appropriately and took her to the nurse, where she finished her lunch. Although, why she couldn't have just finished it on the way to her classroom is beyond me.

The day devastated Jessica. Having to stand up to an adult and say no. At the age of ten, this is not an easy feat. She was so upset by the time her teacher came, that she cried in front of her class. Embarrassment, Humiliation, Fear. All over some uneducated adult's decision not to listen to a child who knows her own health condition better than anyone else.

I was filled with so many emotions. Extreme Anger. It took all I could to go home and write a polite but assertive email, rather than rushing into the building and screaming and yelling. But, also Pride. Jessica knew what the right thing to do was. And, when challenged she held her ground. She did what she needed to do to make sure she was safe. And, although it cost her humiliation, fear, and embarrassment...she did it.

But, it angers me she had to. Despite all the hours and effort we have put into making sure she is safe at school, things like this still occur. And, they will continue to. Her school is amazing. Her teacher, the nurse, and even the principal handled it well. The principal even came to check on her later in the day and make sure she was ok.

And, it is not the first time she has been treated wrongly at school. At her old school she was forced to check her blood sugar in stairways. The nurse would psychoanalyze her sugars..."Now, Jessica...what do you think could have happened to make you 200?"

We have always responded quickly and assertively, but the truth is that these things will continue to happen and I know it. A 504 plan, while a good start, can not fully protect our children when we are not there.

November is National Diabetes Month. A time to remember to educate, advocate, and fundraise. These are the tools we have to help our children. We must educate those who don't understand. Many will never "get it," but we at least need to know that they have enough knowledge to keep our children safe when we are not there. And, we must advocate. We need faster FDA approval, we need more funds dedicated to Type 1 research, we need life and health insurance policies that are fair and not based on lumping life expectancies of Type 2 and Type 1 diabetics together. We need school policies that keep our kids safe, and that don't allow discrimination based on a health condition that is difficult to control. And, we must fundraise towards a cure.

But, until then, we must support each other in this journey. We cannot do it alone. We are stronger, and our kids are stronger when we stick together. Our life was changed by finding Children With Diabetes. I wait impatiently for the next conference in February, where for one weekend we will once again be enveloped in support. And, where we will have the chance to support others.

Together, our children will grow up healthy and strong.
Together, we will support each other.
Together, we will find a cure.

Thursday, October 25, 2012

Diabetes doesn't care if you're exhausted, have work deadlines, or your beloved grandmother has died. It doesn't care if you're sick, or overwhelmed, or just plain sick of it all. It doesn't care if you have a math test, or a race to run, or are in the middle of an important work meeting. It is selfish and demanding and relentless.

Jessica had her endocrinology appointment this week. I love where she goes, and her caretakers there. But, I have to be totally honest. With Type 1 diabetes, 99% of the management happens at home. We lowered her Hemoglobin A1c from 8.1 to 6.8 in three months. This is a huge accomplishment. And, it took an enormous amount of work. And, 100% of it happened at home, with no communication between her diabetes care providers and us. This is not to say that they would not be available if we were to ask for help. But, once you learn the ins and outs of changing all the basal rates and I:C ratios, it is really a self management disease.

Last visit we were congratulated on lowering her Hemoglobin A1c from 8.2 to 8.1. I am a physician. I know that this could have been laboratory error alone. And, while I hugely appreciated Jessica's provider trying to give us encouragement, and I do the same thing as a physician, this really bothered me. I try so hard to motivate my own patients..."wow...you were 322 pounds last time I saw you, and now you are 320 pounds....great job!" I know patients are all just doing their best. I am just doing my best. But, I left that visit telling myself that I just knew we could do better. Again, this is not to say that we didn't appreciate the encouragement, or that I am not encouraging of my own patients when they make small positive changes. But, I felt that we had reached complacency. We were used to the pump. We were used to diabetes. We had been managing things the same way since we got the pump, and we were getting positive feedback. And, it was a lot of work already. Being congratulated on moving a lab value by 0.1 just seemed to highlight the complacency.

And, so things changed. Every family living with a Type 1 child needs to figure out what works best for them, and there is no "right" way of doing things. The hubby and I had been co-managing Jess's diabetes since she was diagnosed. For a number of reasons, we decided I would take over sole management of her rates and ratios. Part of this stemmed from conversations I had at CWD FFL with another mom whose husband and daughter also have Type 1. We discussed how managing their own diabetes was already such a burden for our husbands, and by taking on the management of our daughters we could help not add to that burden. I also realized that when two people manage a condition, no one truly takes ownership. Some days I would get home from work late and not look at her meter figuring the hubby had done it. Other times I would wake at 3 am and check her blood sugar without being aware of what had already been done. This worked fine. But, I have never been one to settle for fine. And, I just knew we could do better.

And, so Jessica and I became a micro-team within our little family of four team. And, we were super stars. No matter how busy or tired, every single day I reviewed her meter and took action. I have woke between 2-3 am nightly to check her. We nailed her basal rates and I:C ratios and she jumped up and down with glee and ran to tell her diabetes provider when the machine at the office flashed 6.8 this week. And, I was thrilled and proud.

But, the problem with diabetes is that it does not end. I am used to cramming for exams and then feeling the relief when they are over. Medical school and residency rotations may have been challenging but they ended. Parts of my job are horribly demanding but there is relief when deadlines arrive and there is a temporary pause. A day full of seeing patients ends.

But, there is no end here. I am tired of it all and I just want a break. My grandmother died. I just wanted to grieve, but diabetes was there with its highs and lows that could not be ignored. I ran my first half marathon as part of a relay team (6.55 miles!) and even though my kind husband volunteered to wake to check her at 2 am, I still woke up. Work meetings interrupted as her blood sugar is high and the babysitter is scared. Another growth spurt resulting in once again rates that need to be changed. Her Hemoglobin A1c was fantastic...can't we take a break now?

But, diabetes does not end. And, I must once again dig deep inside to find the energy and strength that I need to continue to keep it in its place, all while continuing all my many other responsibilities. I am filled with such admiration for my husband...almost 24 years of doing this day in and day out. I simply don't know how he does it. And, yet he does, all while dealing with all the other stressors life brings.

I am filled with admiration for my daughter. I am filled with pride at the decisions she makes every day. Choosing to delay dinner as she is close to 300. Telling me she thinks a rate needs to be changed. Dealing with all the little comments and looks that occur daily. Handling the miserables highs and lows. The site changes, the numerous pricks that have left permanent callouses on her small fingers. She handles it all with such grace and strength.

At our visit this week her provider asked her to talk to a newly diagnosed family. The little girl was seven-the age Jess was when she was first diagnosed. I was so proud that she wanted to help. And, I can only imagine how much that would have helped me at diagnosis to see such a healthy, happy ten year old who was diagnosed the same age as my daughter. She amazes me.

I am filled with admiration for all the wonderful T1s I have been privileged to meet. I am amazed by what they do to their bodies day in and day out. The way they handle the highs and lows. The littlest ones who can't even understand what is happening, to those I have met living with type 1 healthily for 50 years or more. They are my inspiration and my heros. And, they give me strength. If they can do it, then surely I can do it. Diabetes may not end, but neither does the determination of the human spirit. And, we can do this.

Thursday, September 27, 2012

"You can do this." I repeat this to myself almost every day. My daughter has not taken off her "You Can Do This" bracelet since she got it. I don't know if Kim Vlasnik, the creator of the "You Can Do This" project has any idea how many lives she is truly impacting. The power of these four simple words is huge.

I see so many diseases and so much suffering on a daily basis. It is hard, and perhaps only human, to look at every disease I see and not compare them to Type 1. I am no doubt biased, but I have yet to see a disease that requires so much hourly (secondly?) work. And, I am not sure I have found one that is so laced with guilt. This by no means makes the other diseases easy to have. But, Type 1 seems to be its own unique daily adventure.

It has been almost three years...there is no end is sight. And, the mantra "You Can Do This" sustains both myself, my daughter, and my whole family.

So many normal moments that are impacted by Type 1.

We baked cookies together the other night. I stopped doing this for at least 2 years when she was diagnosed. I LOVE to bake (cooking not so much). I missed it. I needed to bring a dessert for work, and looked in the cupboard to realize decorated sugar cookies were the only option. I didn't intend for her and her sister to help. But, they quickly realized what I was doing, and like any eager ten year olds popped in to help frost the cookies and decorate with sprinkles. I saw her lick frosting off her fingers a couple of times. Who doesn't do this when they bake? I didn't plan ahead and bolus her for this unpredictable moment. And, I truly didn't see her take that many licks.

310. The highest number we have had in weeks. "I hate diabetes," Jessica yells when she sees it. I miss when she was seven in some ways. When the numbers meant nothing to her. When she didn't understand what it meant every three months when she went to her diabetes appointments and heard the value of her HgbA1c. I hate that we can't spontaneously bake and decorate cookies without later having her feel guilty. Of course, I tell her that we only do this on special occasions, that we have insulin and it will get that number down quickly, and that this is absolutely nothing she needs to feel badly about. And, of course, in my head I think "why didn't I bolus her?" But, how do you judge how much frosting a ten year old might lick? And, when decorating cookies at 8:30 pm at night, what parent wants to guess wrong only to have her bottom out later. And, this is truly the first or second time we've done this since diagnosis, so like everything we just need to learn how to do it with Type 1 in the picture.

"You Can Do This," I tell her. It is ok to hate diabetes. I hate it too. But, we had fun making cookies, and we will get this number down quickly. And, "You Can Do This." I see her glance at her bracelet.

A vampire site (Thank you Kerri Sparling for introducing me to the term!) The needle goes in and she yelps. Blood oozes. The famous vampire site that has hit a capillary and is now sending blood dripping down her leg. I pull it and apply pressure. And, of course we need to do another. She starts to get upset.

"You Can Do This," I tell her. Let's not let this become a big deal. Let's just get it done and move on with life and not let diabetes ruin the evening. She calms down, the new site change is done, and we move on.

"A boy at school said to me Oh, I'm high...Oh, I'm stupid...Oh, I can't take a test" Jess tells me. We have a 504 plan for the first time this year. If Jess's blood sugar is significantly elevated she defers major exams until it is in the normal range. It was the right thing to do. Taking an exam with glucose laced brain cells is not fair, and doesn't allow her to reach her potential. But, clearly other students have caught on to what is going on. "That must have been upsetting," I say to her..."How did you handle it?" Jess tells me she told him that she felt that was bullying and that he should stop. I am so proud of her..."Jessica!" I proclaim..."Wow...you handled that so well.....You Can Do This!" She beams with pride.

I wake at 5:30 am to prepare for the day. We find it is easier to manage Jess's numbers, and to ensure her school days are better if we pack her lunch every day. We spent hours researching the grams of carbs in the school lunches, but changes are made without notice, serving sizes vary, and to be honest, in a world where french fries count as a vegetable, I am happier just to have her pack. I hate packing her lunch. Measuring every blueberry on the food scale. Trying to balance a small treat with other food that has a low glycemic index so she doesn't spike too quickly. Making sure I put her post it note with the number of grams her lunch is in her bag. Checking her supply bag for lows, strips, a new tissue. It is a lot of work, and some days I'd love to just throw in a lunchable and call it lunch. I choose not to (this might work for some families) as I have seen in Jessica and Sean the difference high glycemic vs low glycemic foods make in their blood sugars. Some days I would give anything for a break.

"I Can Do This," I tell myself.

Blood sugars of 85 right when I had planned to go to sleep. Knowing that this means at least one more night check. Days with repeated unexplained episodes of hypoglycemia and knowing I'll be up during the night checking. Complete exhaustion. This is the life of every Type 1 parent I know.

"I Can Do This," I tell myself.

The hubby comes home from inpatient. "I admitted a patient in DKA last night," he tells me. Diagnosed at 12...now in her 30s. She just decided not to take insulin. I can see he is upset. And, I am too. How do we not worry this will be Jessica? People telling us "that will never happen to her...she is too smart," doesn't help. How can we possibly know how she will feel after living with this for 23 years by the time she is 30? I can not even begin to imagine how sick and tired she will be of it all. My heart breaks when I imagine the impact it will have on her in middle school, high school, college, and beyond. Site changes every three days for years and years. Multiple blood sugar checks a day indefinitely. Measuring every single stinkin morsel of food...or feeling guilty about it. The co-morbidity between diabetes and depression is huge. I hope we are giving her the tools she needs. I hope she sees that we are a team and always will be. My husband has told me how alone he has felt living with Type 1, how hard it was that when he was diagnosed he was old enough for it to be his disease alone, and what a lonely world that was. We have told Jess we will be there if she reaches a point where she can't do it another day and needs a break...no matter how old she is. We are Team Jessica.

"We Can Do This." My whole family can do this. In part, because quite frankly, we really don't have a choice. But, we CAN choose how we will do this. And, so far I am pretty darn proud of the way we are choosing to live. There is no doubt that this hated Type 1 impacts almost every hour of our life. But, we control it. We don't let it stop us. It may get each of us down at different times, but there is always a member of Team Jessica willing to pick that member back up. And, we are so incredibly blessed to have a big Team Jessica. Our friends and family who "get it." For every child that says something mean or rude to Jess, there are so many more who support her. For every grown up that says something insensitive, or fails to recognize how much work this is, and the impact it has on our lives, there are those that fill us with kindness and compassion. Our close friends, and members of the Type 1 diabetes community that we have yet to get to know well...they sustain us. And, we are showing Jess that she is not alone...it does take a village. And, most importantly I hope she sees that there is no doubt that she "CAN DO THIS!"

Friday, September 14, 2012

I'm running my first race tomorrow. It is just a 5K, but next is half of a half marathon (a little more than a 10K) and after that...well...who knows.

I started out doing it for Jessica. In my profession I get to see a lot of healthy and not so healthy people. If you take bad luck out of the picture, so much of what I see has to do with how people eat and whether or not they choose to exercise.

Like all T1 parents, I will do anything in my power to help Jessica live a long and healthy life.

So, I decided to set an example and when I turned 40 I bought a new pair of running shoes and hit the trails. I wanted her to see that I felt it was important. And, I have tried to bring her along too. We have run together some, and she seems to enjoy it. She eagerly entered the race with me tomorrow. But, then at soccer this week she told me she actually really doesn't want to miss her soccer game to run the race. And, of course I won't force her.

I almost cancelled entirely. And, then I realized that somewhere along the road of trying to be a good example for Jess, I have fallen in love with running.

It is the only time I get totally to myself. Well, of course I bring the dog...after all if I weren't multi-tasking by running the dog, then I'd be taking time completely to myself and then the mommy guilt would kick in!

I run through the woods, listening to the stream and the birds, and my steady breathing. I feel alive, healthy, and at peace. It has been amazing to test my old 40 year old s/p twin pregnancy body and see what it can do. And, it has amazed me.

And, I've realized that just as I so often tell my patients that they as caretakers need to take care of themselves, this is what running has become to me. A reminder that amongst all the focus on my daughter and husband's health, my health is important too and should not be neglected.

It feels odd to be going to a race tomorrow that is not a Race for A Cure or a JDRF walk. But, it also feels guiltily wonderful to be running tomorrow to support another valuable cause. For almost three years I have lived and breathed diabetes every waking and sleeping moment. And, I will continue to do so and continue to support and help my husband and daughter any possible way I can. I will continue to live in awe of all they must do and wish with all my heart that they didn't have to.

But tomorrow morning for a brief time it will be my time.

I don't know how I'll do tomorrow. As luck would have it I'm on call tonight. And, there's the stupid cold I have had all week.

But, if my daughter can be the leading scorer on her soccer team with a blood sugar in the 300's then surely I can do this one small thing.

Tuesday, September 11, 2012

First Halloween with T1- even broken pancreases can't stop the Halloween fun of carving pumpkins with Grandpa!

"Halloween is my FAVORITE holiday," her sleepy voice tells me as I tuck her in tonight. "I just can't wait...I love Halloween!" I smile with complete joy. Just a little under three years ago I was filled with dread while also trying to deal with all the emotions that surround a new Type 1 diagnosis. There is no good month to be diagnosed with Type 1, but especially for a small child October seemed particularly cruel. Jess had already picked out her costume. She was dreaming of candy, and ready for Halloween.

And, then her pancreas went on strike. And, I was left wondering...how do I deal with a holiday whose main focus is candy? Maybe if we had started Jess's diabetes healthcare with the team we have now I would have felt more supported. Her current healthcare provider would have insisted she eat the candy like the other kids, rather than instead giving us information on a program at a local department store where you can turn in all your candy for a small gift card. I am by no means disregarding this program, but what small child wants to take her bag of candy and surrender it for a gift card that doesn't even buy one real toy? I remember thinking "how am I going to pull this off?"

Panic breads creativity.

And, the Halloween Fairy appeared. Both Jessica and Courtney saved five pieces of candy and then decorated a bag to leave the rest of the candy for the Halloween Fairy. In the middle of the night while they slept soundly, the Halloween Fairy appeared leaving her magical pathway of glitter as she traveled across their bedroom. Taking the bags of candy, she left behind presents decorated in black and orange paper and lots of Halloween stickers.

I woke to the kids screaming with glee. "Mom---you were right---there is a Halloween Fairy!" They loved the glitter all over their floor and were thrilled by the presents.

Of course there were questions. Where had this fairy been before? Well, the Halloween Fairy only visits Type 1 children and their siblings, I explained.

Wednesday, August 29, 2012

Jess and I have been working so hard on her diabetes these past few weeks. It is an immense amount of work but she has rarely been over 200. I have been thrilled...she has felt good...and I have just been hoping we can continue it so that her next Hemoglobin A1c kicks butt.

And, then tonight I checked Facebook. A seven year old died in bed of hypoglycemia.

The "Dead in Bed" syndrome that every Type 1 parent I know fears.

This is the down side of good control.

What are we as parents to do?

If we don't aim for strict control we deliver our children to adulthood with years of the devastating effects of hyperglycemia. Jess was diagnosed at seven. By the time she is eighteen she will have had Type 1 long enough to have retinopathy and other complications starting. She is too young to understand this in detail, and too young to fully manage her disease.

But, by working hard towards strict control, the risk increases that she will have a fatal low.

I don't know fear greater than putting a child to bed and praying they will be alive in the morning. No matter how positive I remain it is always there. Those first steps past her bedroom in the morning when I pause at the door to look for the rise and fall of her chest.

My heart absolutely aches for this family.

We need better technology. The FDA must stop the slow approval of life saving devices. We need the artificial pancreas with its auto shut off functions when a low blood sugar is detected. We have been waiting on technology here in the United States that Europe has had for months. It is inexcusable.

Sunday, August 26, 2012

Sending a child back to school with diabetes is no easy feat. I remember hearing a story of a T1 child that went to school and the preparation was a bag of candy that was given to the teacher with the instructions "If he acts funny, give him some of this." I sincerely hope that story is nothing but a story, and my heart breaks for that child every time that I hear it.

I have prepared to the best of my ability. The nurse has all of Jess's supplies. The teachers have their "crash course" sheet on Type 1 diabetes, and their forms I made for the unexpected substitute, the letter for the parents in Jessica's class that will largely be ignored (kindly asking them to let us know before unexpected treats are brought in...). I reviewed all of the laws regarding a 504 from the Office of Civil Rights, and had a meeting with the principal, counselor, teachers, nurse, and district psychologist that went better than I could have dreamed. Plans are underway for the 504 that will protect Jessica's safety, and allow her to reach the potential she would have had if her pancreas had not gone on strike.

Jess and I have spent the past two weeks meticulously managing her diabetes. She has been a trooper brainstorming with me ways to get her numbers in line before the start of school. We have kicked butt and I have wished her Hemoglobin A1c could be based on two weeks and done tomorrow.

And, the big day is tomorrow.

So, of course all hell breaks loose.

She wakes today with a blood sugar of 64. Just when I thought I had nailed her overnight basals. She levels out before breakfast only to rise to 302, followed by 397 after a correction. Just as I am about to pull the site, she plummets to 81. She then has repeated lows, alternating with highs. All of this with her barely eating a thing.

"I'm not hungry" she tells me. "My stomach is a wreck." We spend a long time talking. Of course, she is scared to return to school. The lone T1 in a sea of working pancreases. Not to mention the normal start of school jitters every child is prone to.

I don't know if that is why her numbers have been a mess today, but I do know it hasn't helped. "What if my numbers do this tomorrow?" I reassure her we will work through it just like we always do, and she won't be alone.

I know she'll be fine. She is so brave. I struggle with stage fright and public speaking, yet watch her practice her power point that she will give to her class to explain what diabetes is. I know she will weather this transition from summer to school once again, and emerge stronger than before.

The transition is hard for me too. She has been safe this summer---watched closely by myself or her wonderful babysitter with Type 1. She attended CWD where she spent the week in a cocoon surrounded by other Type 1's. It is hard to watch her return to the "real" world where she is alone and I can not protect her.

Yet, I know this is her life story. It will form her and make her into the adult that I am beginning to see glimpses of. These back to school jitters will be just one of many obstacles she will have to encounter. And, she will. Broken pancreas and all.

Wednesday, August 22, 2012

I went to a wonderful lecture at the Children With Diabetes conference that discussed some of the psychological factors involved in the caring for a T1 child, including site changes. I swallowed back tears as he told the audience that one reason diabetes is so hard is that it is a constant reminder that as a parent "you couldn't protect your child." And every blood sugar check, shot, site or dexcom change is just another reminder that we as parents were unable to protect our child. I know he is right. I spent many months after Jessica was diagnosed beating myself up for many ridiculous possible things I decided I had done that had led to this inability to protect her. I only breastfed nine months, I put her in daycare, I gave her too much cows milk, I hadn't fed her an entirely organic diet, and many other absolutely ridiculous ways that I as a parent had failed to protect my little girl. And, watching a child dread site changes and scream when they hurt is a pretty good reminder that I was unable to protect her.

He told us that if site changes were taking more than 5 minutes it was a parent issue, not a child issue. This really made me think, and was a life changing lecture.

In the beginning when Jess was diagnosed and on multiple shots a day she developed this ridiculous routine before each shot. We had fallen into the same pattern with site changes. She has to lay on the bed and go through an entire routine that involves begging "please don't do it until I relax...you can't do it until I'm relaxed"...all the while her anxiety building. The hubby and I have approached this different ways. I have felt the anxiety and anticipation is the worst part, and have inserted the site with no warning. The hubby has let her tell him when to do it with site changes often taking 10 to 15 minutes or more. Neither of us knew what to do or how best to truly handle her anxiety surrounding them.

It took talking to other families living with Type 1 and this lecture to help me understand why. As much as her site changes remind me that I could not protect her, they absolutely kill my Type 1 hubby. As many times as I and others have told him it is not his fault she has Type 1, the guilt remains. It doesn't matter that he rationally knows Type 1 is multifactorial, or that of course he has no control over his genes...the guilt remains. And, so the drawn out site changes are a parent issue, albeit it not one that is at all his fault or a conscious decision.

As luck would have it Jess had a site failure shortly after I heard this lecture. The conference took place at the biggest hotel I have ever been to, and to go back to the room to lie on the bed and do her routine would have taken the whole afternoon. Much to her protests, I told her we were doing the site change in the bathroom. She panicked and was not happy, but we did it in less than 5 minutes! Victory!

When we returned home I took over site change duty. I hate it. But, I know the hubby hates it more. We did well...accomplishing all of them in 5 minutes or less. And, a HUGE moment. Jess did the first one completely on her own.

But, one night I was stuck at work late on a site change night, and somehow we fell into the pattern of the hubby doing them again. The drawn out site changes began again, and she stopped doing them on her own. She had two in a row that hurt and her anxiety escalated. Once again the anticipation and anxiety became the worst part. She once again became her own worst enemy.

It is frustrating and heart wrenching to watch.

I have taken over site change duty again, and I am determined to conquer these fears and anxiety once and for all. I told her we are making a game out of site changes and doing them in a different room every night. Tonight we did a site change in the garage. My hope is that this will break the cycle of her needing to lay on the bed and do her ridiculous routine. I took the Tiger Mom approach earlier this week and told her if she didn't do it herself, I would and I would pick a new spot to try it (she only agrees to her buttocks and is terrified to try any other spot.) I basically yelled at her to "Push the button, push it now!" I hated myself, but she did it and it worked. And, it didn't hurt. Her numbers were thankfully great the next day, and I told her that she must have done one amazing site change. Tonight she said "If I don't push the button myself, you'll do it in a new place?" It is like she needs to hear this to force herself to do it. But, we are making progress. She has done the last two in new areas of the house and pain free. And, in under 5 minutes.

This is such a balancing act. On the one hand I want her to conquer her anxiety and be able to do these hated site changes quickly and painlessly. On the other hand I want her to know that I will always be here to help when she just needs a break, and that she doesn't need to take on this new stage of self-care.

My heart so bleeds for her. I can't imagine how she will do this the rest of her life. I have been exhausted with a too busy work schedule, home responsibilities, and all that is involved in sending a child with Type 1 back to school (not to mention preparing for our first ever meeting with her school to implement a 504 plan.) It has been an effort to come home every night and review all of her numbers and make changes. I am determined to see better blood sugar control as we enter this new school year. I mentally groan when I realize it is a site change night. I am so incredibly sick of it all. There is never, ever a break. Every vacation, every second it is there. I am constantly a cheerleader, telling her she can do it, supporting her on her "I hate diabetes days." It has been almost three years, and enough is enough. I just want it to go away. And, the guilt just fills me. How dare I feel this way? If it is this exhausting for me, how must my husband feel after 23 years? How will Jessica feel as the years march on? I freaking hate this disease.

But, I will keep working. I am determined to help her conquer this site change phobia. I couldn't protect her from getting this, but I will give her the tools she needs to fight it. And, I will stand and fight it with her.

Thursday, July 26, 2012

It was an ordinary night. I was making dinner. The hubby was still at work. Jess left to go upstairs and I didn't even notice.

"Can you come here mom?" I hear from upstairs.

And, there she is. She has the site change all set up and she is holding it on herself about to press the button. She has done this but once before, and it was very directed by myself. Her fingers technically pushed the button, but they were under mine and there was a lot of coaxing.

"I'm so disappointed- I wanted to come downstairs and tell you I did my own site change." "But, then I decided I wanted you here for this. I'm so scared mom- I'm shaking." And, she is. Her whole body is trembling, especially her little hands.

"I can do this," she says. "I'm wearing my bracelet." She is wearing an "I Can Do This" bracelet from the Friends For Life conference (The "I Can Do This" project is amazing-check it out!) "YES, you can," I reiterate.

And, she does. The site goes in. I truly don't think I have ever seen her so proud. She jumps up and down screaming, hugging me tight. She calls daddy at work. She runs downstairs and she and Courtney do "the happy dance." I am so incredibly proud of her. And, more so - I am so incredibly happy FOR her. What a huge hurdle. What a huge step towards independence.

And, for one split second I feel a bit of pain. I have done so many site changes for her. I have loved being able to take this one part of the burden away from her just a bit. Have I done my last site change?

The thought passes as quickly as it came. Happiness floods me.

And, my sweet little girl says "Mom, if I'm tired or just don't want to do one---will you still do a site change for me?" "Sweetie- even if you are thirty years old and you call to tell me you're tired and sick of it and you just need a break-I'll be there." And we share the sweetest hug.

I'd like to think this has been a life changing summer for Jessica. We found the Children With Diabetes support network and so many amazing, amazing people. She knows we have already registered for next year.

We have had a wonderful babysitter who happens to be a college student with Type 1 with us. I can only imagine the comfort this has brought Jess.

I hope these memories and experiences are enough to help her through this year. She'll be the only Type 1 kid at her school this year. The only other Type 1 having gone on to middle school. I know it is lonely. And, it is no fun to be different. But, she is also but a phone call or email away from so many who support her now---so many who know just what it is like.

We have her diabetes appointment Monday. As usual I fear the "mommy report card." But, I am also glad it is still mine to feel guilty about. I dread the time when she takes ownership and feels the guilt and frustration that my husband and all other Type 1 friends I have talked to feel when their HgbA1c is not up to par. I try to remind myself that we have accomplished so much this summer. Even if her number is not at goal, it can not take away from the hurdles we have jumped.

While at the Children With Diabetes Friends For Life conference we had the exciting opportunity to experience the exhibit hall! I felt a little hypocritical at first. As a physician I don't interact with pharmaceutical representatives (aka "drug reps".) In fact the Department of Family and Community Medicine where I work has a policy against meeting with them at our offices or taking any kind of food or monetary gifts from them. I agree with this overall---there are good studies demonstrating the influence meeting with them can have on physician prescribing patterns. It is easy to be swept away by their sales pitch and not stick to evidence based, often less expensive medications that work. In addition, ethically I do not feel physicians should accept meals or gifts from these companies---the money should go towards research or programs to aid the financially disadvantaged with obtaining their medications. So, it was a bit of guilt that I entered the exhibit hall. I made the psychological decision I was entering as a mom, not a physician.

I was bombarded by booth after booth and saw many new and exciting products. I spent at least a half hour drooling over the Tandem T-Slim insulin pump and wishing I had enough money that I could surprise my husband with it. But, more than that it gave me hope for what is yet to come. If Jess can have something like this in high school I doubt she will be as bothered carrying an insulin pump. For those of you that haven't seen it---check it out. It is smaller than an iPhone and looks almost like one, complete with a touch screen.

And, then I saw it. The One Touch Verio IQ. This little meter is amazing. First of all---it is small and light. You can barely tell you're carrying anything. It has this nice color screen as shown above that lights up. And, it even has a sunshine on it! How cheerful is that? Yes- you have to prick your finger now. And, yes that sucks. But, look---the sun is shining and it is a happy day. Subliminal? Maybe. But, I find myself feeling a bit more cheery every time I see the screen. One of my favorite features occurs in the dark of night. Hundreds of times I have tip toed into my daughter's bedroom and used my cell phone as a flash light to try to see what I am doing to test her blood sugar. I have missed many a time, accidentally getting blood on her sheets or pajamas instead of the testing strip. This meter has an amazing light. I can see everything! And, that little sunshine is there cheering me up a bit in the dead of night. But, here's the best part---it tracks the blood sugars and alerts you to possible patterns with a friendly message. Whoever invented it was smart enough to not come up with messages such as "Hey dumb shit---you've been high every day after breakfast. Do you think you should change your breakfast I:C ratio?" No- this meter tells you in a very friendly manner that it is tracking a pattern you might want to be aware of (without reminding you that you really suck at downloading your daughter's meter on a regular basis, and that it often takes days for you to think- "huh- I think she's been high every morning after breakfast.") This is even more important for low patterns! I am already seeing tighter control for Jessica. Its like partially being able to delegate all the analyzing that is involved with managing this disease. Now- if I could just teach it to cook!

Does it have down sides? Sure. For one, it doesn't remotely control her insulin pump. So, after I check we either manually enter her blood sugar into her remote meter or pump. So far, even Jess likes the Verio so much that she is only happy to do this.

I hear it downloads to Diasend as well. We have an endo appointment Monday so I guess I better figure that out this weekend. And, yes, the last time I downloaded to Diasend? I think about three months ago before her last endo appointment. Sigh.

Thursday, July 19, 2012

In early July we attended our first ever Children With Diabetes Friends For Life conference. I hope to never miss one again.

I have been swamped since returning, but in spare moments have wondered...how could I even use words to express the enormity of this conference?

Enormity in so many ways...Size: over 3000 people all living with Type 1 diabetes in one place...Emotions: I don't think I have ever cried and laughed so much in one week...Learning: so many educational sessions all running at once-at times it was hard to choose just one...Fun: from the banquet to the beach party to the exhibit hall to Sports Central-the fun didn't stop...Connections: we made friends and built bonds that we hope will continue year after year. Gone was the need to spend time explaining Type 1, and how we have to live, and please don't get that deer in the headlight look...instead instant connections were formed...all of us living with this shared bond. It was like coming HOME.

So many moments fill my memories...sitting at dinner one night in the hotel at a Hibachi restaurant and looking around the table to realize everyone at the table was from the conference and living with Type 1. All the kids (and adults!) checking blood sugars and taking insulin at the same time. Green and orange bracelets everywhere (the bracelets of belonging...green for having Type 1 and orange for those who love them.) Looking around the hotel pool and seeing not only a sea of bracelets, but also dexcoms on childrens' arms and pumps everywhere. Having moms I don't even know offering my daughter glucose tabs when she was low in the pool. Looking around the hotel and seeing test strips everywhere...and they weren't ours! Talking with other moms and hearing over and over that we share the same fears. Getting to know another woman who is also a spouse and mom to a Type 1 and finding out we have so much in common in our unique roles as dual caretakers. Watching Sean connect with so many other Adults with Type 1's (there is an entire track at the conference for Adults with Type 1.) He has spent so much of his life with diabetes in complete isolation...it was almost like watching a butterfly emerge from a cocoon as he bonded with these wonderful adults. Meeting so many celebrities living with Type 1 and watching the stars in my daughters eyes as they interacted with them. Going from booth to booth in the exhibit hall and having a chance to see new insulin pumps up close, taste different glucose tabs, see new tools to make life easier. They even had a Build A Bear exhibit to make Lenny the Lion who has Type 1 with parts of his body all ready for kids to practice insulin shots or pump/Dexcom insertions. Learning about Coco-the Disney character who has Type 1. Seeing the convention center covered with Children With Diabetes posters, and collages of all the kids. Meeting so many heros...young and old. I am simply in awe of the children and adults living with Type 1. For all of these moments, there were hundreds more. It was quite simply like feeling like you finally found HOME.

I was not expecting the complete pit of emptiness that enveloped me the day the conference ended. We made the mistake of staying one extra day. We watched the orange and green bands slowly disappear from the hotel. It was culture shock to walk in the lobby the next morning and not see a single green or orange bracelet. Likewise, we made the mistake the night the conference had ended of walking through the convention center to get our car. All the posters and decorations were gone, and in their place the ones for the new conference starting. I haven't felt that empty in a long time. This was shared by every member of my family. All four us forced smiles and tried to cheer each other up.

This week Jessica's green bracelet finally fell off. The look of devastation on her face was not easy to take. I asked her why she was so sad the bracelet had come off. She said "Because it meant I am not alone and it reminds me of all the happy memories of the conference." I had her tape it to her desk where she can look at it and remember...until next year...when we return HOME.

Tuesday, July 3, 2012

You will be ten soon. A decade. You don't remember life without diabetes. But, I do. Our first seven years and three months were without fingersticks, site and dexcom changes, highs and lows. I worried about normal childhood things, but not that you would die in your sleep. Your little fingers looked like they do in this picture---free from the callouses of multiple sticks. But, your smile is the same. You've always had a smile that could light up the world.

I know you are fine. I know we are lucky we had seven years diabetes free---so many I have met did not even get that. The painful moments are few and far between now. You are growing up into such a beautiful young lady. I am so proud to be your mom.

I can't help but wish you remembered "before." We had such fun times. There were times I let you eat as much candy as you wanted, times you drank tons of the chocolate milk you love, times I didn't ask you to check your blood sugar, or ask "are you high...are you low?" Times we just took off for fun "mommy days" without the big diabetes backpack following along. There were times every third day didn't involve the site change you still hate so much. Times you didn't have to wear all these gadgets around your waist. But, I also know maybe it is easier you don't remember.

You will be ten soon. And, despite the drop of sadness I feel, I remind myself that a very short time ago you would not have turned ten. And even though insulin is not a cure, it has kept you alive with your smile that lights up the world. Happy Birthday baby girl. I love you more every single day.

Monday, June 25, 2012

Vacation with diabetes...an oxymoron? If not, then certainly at least an adventure.

Day 1: Kuddos to mom...I remembered not only to set a temp basal for the long plane trip, but also to re-set the clock on her pump for the time change. Well done, yes...well done.
Short victory...we get in very late and Jess wakes the next morning in the 500s despite going to bed in the low 200s. Delayed effect of inactivity??? Stress of traveling??? Pump site all ok and she comes down. I am left wondering how to prevent this in the future as I already did the trick I knew by increasing her basal rate for the plane ride. Hmmm.
Diabetes 1. Mom 0.

Day 2: Sporadic blood sugars all over the place. Imperfect carb counting. Car ride. Stress. Who knows. But, no higher than the 300s so we'll count this as a tie.
Diabetes 2. Mom 1.

Day 3: Awesome day of hiking. Remembered to bring supplies for emergency site changes, lows, glucagon, snacks, water. And, that is in addition to first aid kit, snake bite kit, biodegradable toilet paper, survival kit, layers, and lunch. We check frequently on the long hike, and have an incredible day of hiking to mountain lakes.
Diabetes 2. Mom 2.

Day 4: Wake to a night of high blood sugars and ketones, with a much despised 2 am site change. Leading theory...it was HOT on the hike. Hotter than the beach. Both the hubby and I decide that the insulin in her pump tubing probably went bad. We change the site and the insulin. By the next morning trace ketones and blood sugars in goal. We set off for a day of white water rafting. We haven't taken Jess White Water Rafting before and Sean hasn't been since he has been on the pump. This takes some preparing as the dry bag they give us is very small and won't be reachable during most of the trip. I put skittles in triple ziplock bags and stick them in Jess's pants for emergency lows while on the water. We have an INCREDIBLE day and are thrilled the girls fall in love with white water rafting as we previously have. Diabetes won at night, but we'll celebrate a victory for the day!
Diabetes 3. Mom 3.

Days 5-10 more of the same. We travel to our cabin in Wyoming which is on dirt roads and without reliable cell phone coverage or electricity. We go on long hikes without cell phone coverage. All of this means thinking ahead to be prepared to handle any diabetes emergency ourselves, as help may take awhile. I talk out loud to Jessica as I pack for these outings. I explain why I am bringing the different things I am bringing, and how they would help us if her pump fails, or if she has repeated lows.

In the end, although we were forced to travel with an unwanted monkey on our backs, I would declare the trip a victory.
I want Jessica to see that she can do anything. Diabetes shouldn't stop her from climbing Mt. Everest if she so desires. The question should not be IF she can do it, but HOW she will do it. I'd like to think we are showing her this. We have managed to keep doing all the outdoor activities we love despite dying pancreases. My hope someday is that she will be cured of the monkey on her back. But until then, I want her to see it as all it is...an inconvenience not a limitation.

Saturday, June 9, 2012

Do we as human beings need to blame someone or something? When Jessica was first diagnosed I blamed myself. I knew genetics had contributed, but something in her environment had tipped the scale. Was it that I only breastfed for 9 months? Did I allow her to drink too much cow's milk? Was it that I put her in daycare so I could finish my residency and begin working as a family doc? What environmental insult had I not protected her from? Thankfully, those days have past. I now only rarely give thought to what triggered the death of her pancreas. It is what it is. And, truthfully I now see so many ways that diabetes has formed her that I can't imagine what she would even look like had it not occurred. I'm thankful for time. It does heal.
But, I still blame myself for many things. Work has been crazy. And, lets face it...diabetes and all of the carb counting has destroyed my love of cooking. I now view all the meal planning and measuring as a dreaded task that I am only too happy to avoid. Others talk of retiring if they won the lottery. Not I...I would hire a chef! We've eaten out more than I would like to admit this month. Although we have gotten pretty good at guessing carbs, it is not the same as when we eat at home. I can pacify my guilt in the moment and tell myself restaurant fajitas are somewhat nutritious. And, geez...at least we know the carb count of a Happy Meal. But, it is not the best thing for Jess. And, I know that.
When her numbers are high or I failed to predict a low...those all lead to the blame game as well.
And, I am not alone in this unrealistic game.
I diagnosed a patient with new onset Type 2 diabetes last week. This is not unusual. Sadly, I do it all the time. I am always learning from how different patients process the diagnosis different ways. Some blame me..."Until I came and saw you for a physical I was fine...you gave me diabetes." Others meet it with denial..."No one in my family has diabetes...are you sure your test is right?" This patient blamed himself.
I haven't seen him often. But, I've been slowly getting to know him. He's wicked smart and very involved in his healthcare. I last saw him over a year ago. He's not from this country. But sadly, as so many immigrants, he has quickly become assimilated into our wonderful American society...with its fast food at every corner, overall lack of exercise, and busy, hectic pace. He's always had normal bloodwork...we've even checked a HgbA1c...not standard of care in someone who's sugars have always been normal, but he requested it given that his mom has diabetes.
He called me a few weeks back. "My sugars have been running high." Apparently he has a meter at home and has often checked his sugars in between doctors visits. "I need to be checked for diabetes." I ordered the appropriate blood work which did indeed meet the diagnosis. And, I brought him in to talk.
I walk in the door and he greets me and then says "It's my fault." "I haven't been eating right or exercising...I've gained some weight...this is all my fault." The Blame Game has started. Whoa. Sit down. I tell him many things that I hope are comforting...this is not his fault. I have patients that are 300 pounds and eat Ho Ho's for breakfast and they don't have diabetes. And, even if they did it wouldn't be their fault. In my head I think to myself if we are going to blame anyone, blame America's society and its lack of emphasis on healthy eating and exercise. But the truth is it is no one's fault. Some people get lucky in the gene game and others don't. Sure environment plays a role, but it is not the only player here. I tell him that we all need to focus on healthy eating and exercise, and that just as I try to do that, I hope he will too. But, we are not perfect and we all can only do our best. We talk about different ways he can make changes and how we will work together to manage this. I ask him about his mom. "She's got it bad" he tells me. "She's on insulin." I check my baggage outside the encounter as I think to myself that I wish that wasn't the definition of "having it bad." I talk with him about how proactive he has been in catching it early, and that I know we can work together to keep him healthy. I'd like to believe him when he tells me how much better I have made him feel. He says he's glad I'm his doctor and he feels so much more hopeful. I'd like to think he won't go home and continue the blame game, but that he will focus instead on being positive and making positive changes. If I've made that difference, I've done well. I know that in the end it won't be the metformin I prescribed him that will ensure he does well. It will be his acceptance and his sense of control over this new diagnosis---his ability to shift from self blame to self help.

Thursday, May 31, 2012

Murphy's Law: Jessica's blood sugars will choose the seven nights I am on duty alone to go completely haywire. I freakin hate Murphy's Law. I am exhausted. Utterly and completely exhausted.
In diabetes defense, it is not entirely the blood sugars' fault I am so tired. I sometimes wonder how much medical school and residency have molded me in how I care for Jess. Do I worry about different things than other parents because I have seen so much? Am I harder on myself as I have been exposed to years of hearing about the "non-compliant diabetic?" I know it is because of my medical training that I try so hard to empower Jess---to make this her disease as much as it can be a 9 year old's disease...to teach her and let her make as many decisions about her own care as she can. It is also my medical training that leads to me sleeping horribly when I am on my own with her.
A common feeling among my friends in residency was the huge PHEW you felt the morning after call when an unstable patient had not died on your shift. This feeling really can not be described unless you have experienced it. I remember so vividly sitting apprehensively multiple times during residency and getting "sign out" on unstable patients that might not make it through the night. I would count down the often 24 or more hours I was on call as I kept such a close watch on these patients. I absolutely did not want the patient to die on my shift. Obviously, I did not want the patient to die at all...but every resident I knew would breath a sigh of relief when they could sign over these unstable patients and go home to rest knowing they had done their very best and the patient was still alive.
In some weird way when I am alone at night with Jess these memories and feelings return. When the hubby and I are both here at night the responsibility is shared. If I don't hear her Dexcom alerting us that she is low then he might. There is back up. But, when I am alone I am transported on some level back to residency. Jess is my only patient and I am on call every night. And, God dammit, nothing better happen to her on my shift. The "dead in bed syndrome" haunts me when I am alone at night. I wonder for the millionth time why she does not wake when she is low. I simply can not fathom going in her bedroom in the morning and finding her dead. I can't imagine ever recovering, nor can I imagine living the rest of my life knowing that I was the one here alone when it happened, and that I failed to keep her safe. This would be the ultimate failure as a parent and as a physician.
It is like her pancreas knows my fears and taunts me. One night this week she was high all night. She had ketones. Jess pulled out her site to check as we were both sure it was kinked. It was completely fine which led to her crying and saying "Daddy inserted that site...I want daddy to insert my site." Of course, she knew he was at the hospital and couldn't. I reassured her that I do kick butt site changes and thankfully we did not hit a nerve. She continued to run high and for the life of me I could not figure out why. The next night...lows. So much scarier for me then the highs. I no sooner would treat a low and give a snack then the Dex would be going off again to alert me she was falling fast. This after a night of highs with nothing different. And two more nights with lows despite changing basal rates. Tonight I went to bed at 9 pm...simply could not stay awake any longer. I woke from a sound sleep to my hubby shaking me at 10:30..."I'm so sorry but you have to get up. Jess has been low three times and I've fed her so much she is refusing to eat. I have to leave for the hospital and you are going to have to recheck her." I groggily get up and put her in my bed for the 5th time this week. It is easier to check her without having to get up. I also have an unfounded theory that if she were to get low I would sense it when she is next to me. Or, I would wake if she had a seizure. At least I tell myself this is the case. And, so tonight will be another night of restless sleep and blood sugar checks. This "call" every night is killing me...in residency the most frequent I was ever on call was q2 (every other night) and there was time to rest in between. My days have been packed with my own patients and my daughters who need me to care for them. I am counting down the hours tonight until the hubby is finally off these seven days and my "shift" is done.

Friday, May 18, 2012

Our journey with Jessica's diabetes has been unusual compared to some. Her diagnosis, while emotionally devastating, was physically easier than others. We were INCREDIBLY blessed that she was not sick at diagnosis---just simply thirsty. She will forever tell everyone that she "got diabetes in a McDonald's parking lot on the way to Shenandoah." I have often had some form of survivor's guilt as I have listened to others tell their diagnosis day stories. I realize how lucky we are in this regard, and knowing what we went through those first few months simply cannot imagine what others have gone through.
Jess was on incredibly small doses of insulin for months. She used to take 1/2 unit of Lantus a day, and 1/2 unit of Novolog with meals. They thought perhaps she had MODY (a cluster of genetic forms some of which only require oral meds). She never had positive islet cell antibodies (a hallmark in Type 1). She never had ketones---not even at diagnosis when we found that the "critical high" on her meter was actually a blood sugar of 684.
This gave me hope. So many of the potential areas of research are focused on stopping the body's attack on the pancreas and allowing the beta cells to regenerate. We were different I assured myself early on. Jess would continue to make insulin as demonstrated by her extremely low insulin requirements and lack of ketones. That cure might come.
Maybe I needed this early on. I definitely wasn't fully ready to accept that this was it. This was how it was going to be. My "perfect" little girl surely could not be un-repairably flawed. I needed hope to survive that first year.
Even though I continued to live in denial and tell myself that Jess's pancreas was only sick not dead, we did as we were told. We checked ketones with two unexplained highs on the pump. They were always negative. Of course they were I told myself. Her pancreas is still chugging along, just on a slower track than normal.
But, of course, her rates climbed as the honeymoon ended. And, I healed. We all did. Diabetes moved to the back burner, instead of suffocating us with its glaring fire.
Until one night the pump was forgotten by the bathroom sink.
It was then we were given a true glimpse as to the well being of Jessica's pancreas.
She awoke nauseated and having to pee...and, the ketone meter declared her pancreas's death. Large ketones. A working, living pancreas does not allow large ketones to be made.
I paused as hope shattered. But, the pain I expected wasn't there. A bit of an ouch perhaps, but not the deep heart wrenching pain I had anticipated.
Time had shown me that I still have my "perfect" little girl. Only she's not as little. She's bigger, stronger, more resilient, and simply my hero. And, although I would give anything to revive her pancreas she's absolutely "perfect" without it.

Monday, April 30, 2012

One of the things that has been a positive about Jessica's diagnosis is the fact that I would like to think it has made me a better family doc. I have never lacked empathy, but at times I have lacked patience. I would be lying if I said there weren't times when I have been frustrated by my patient's "non-compliance." I hate that word..."non-compliance." What does that mean anyhow? Life is complicated and busy. People are humans incapable of perfection. And, taking care of one's health is HARD!
The nice thing about Jessica's diabetes (and I can finally see so many nice, good things) is that it keeps me humble.
Case in point:
Last night the hubby checked Jess before we went to bed. 122. Exercised all day. Dexcom currently broken and awaiting a new. Kid doesn't wake when she's low (the most terrifying thing as a parent.) So, Sean gives her a snack. I fall asleep and don't wake until 3 am. What I didn't know is that Sean had checked her at 11 pm and she was 300 and he had bolused her. I check her. 340. Wow, that must have been some snack. I bolus her and go back to bed (I was only ever half a wake anyhow!) The ping has a remote which I love. But, we discovered its flaw last night! Jess wakes at 6:30 am as she has to "pee really bad." I check her again and she is still 340. That's weird I think...better check ketones and her site. LARGE ketones. Holy shit! The kid never has ketones...she didn't even had ketones at diagnosis. Once with a kinked site she had small ketones...but LARGE? I unzip her one piece pajamas to check her site, and pull it in preparation of inserting another. Jess realizes before I do..."my pump isn't on. Oh no---I forgot to put my pump back on after my shower." Apparently the pump was in range of the remote so we were bolusing the bathroom sink all night. The blame starts. In my head...I am blaming myself. I suck. I am a terrible mom. In my head I blame Sean...if she was 300 why didn't he wake me to tell me so I would have known the history to the 340? But, before I can even voice any of this, there is my nine year old daughter out loud blaming herself. "How could I do this?" she says. "I'm so stupid...I can't believe I did this."
Whoa...stop....
I tell Jessica (and myself in my head, and my hubby who I am sure has been having the same self blame thoughts)....if we are to blame anyone...blame diabetes. If we are to be mad at anyone, be mad at diabetes. "Normal" people don't have to remember to "plug" back in after showers. It is diabetes's fault she must now remember. We are human. We are not computers. We make mistakes. She has had the pump over a year and this has not happened before. It was a multi-system breakdown, but we are each but a human.
I guess we were "non-compliant" last night. But, life is messy. Life is busy. And, we are not perfect. My patients' have messy, busy lives too. I'll once again remember that when they are "non-compliant."
And, Jess is fine. The ketones cleared within a couple of hours and she returned to her messy, busy, non-perfect life.

Sunday, February 26, 2012

We attended our first Children With Diabetes conference this weekend. To say that it was an absolutely amazing would be the understatement of the year. It was like going home. It felt as though we were welcomed into this huge amazing family with open arms.

Jessica has struggled deeply lately. Although in retrospect it makes perfect sense, I did not realize that it is partially because she has entered a new developmental stage. When an adult is diagnosed with a chronic disease they are, for the most part, done developing. Children continue to work through the developmental stages. So, what diabetes meant to Jessica at age 7 is very different than what it now means to a 9 1/2 year old. She has been processing and mourning what the diagnosis means to her at this age, and it has been a bumpy road. Add her major growth spurts and pre-pubertal hormones into the mix and the high blood sugars have made her even more miserable. My heart has ached for her, and I have been more than a little frustrated at taking the burden of many of her outbursts. She has told Sean and I often that we don't know what it feels like to be her. She is absolutely right. And, so we registered for this conference hoping it would help. Jessica was not excited to go Friday..."why do we have to go to this conference? I know I'm not alone in having diabetes...why do I have to go see other kids with it too?" But, we drove to Conshohocken (I kid you not...that is really the name of the town!) and made it to the hotel late Friday night.

Within an hour of the conference starting I knew we had done the right thing by coming. There is simply nothing else like spending time with other families who in this one area are living as we are. We saw old friends and met so many new. We all share the same language, we all know the emotions, the roller coasters, the highs, the lows, the fear, the pain, the hope...it was like being surrounded by so many kindred spirits.

The day was packed with lectures for the grownups, while the kids were in their own sessions. My mind spun from the graphs, the equations, the massive amounts of information being thrown in my direction. My heart ached from hearing others diagnosis stories, and bled from talking with the newly diagnosed. I am not yet so far out from Jessica's diagnosis that it does not cause physical pain to think about it, and to see others in such pain. But yet, I was able to tell them..."It gets so much better." And, it has. It so completely has.

I met so many absolutely amazing kids. Kids that were diagnosed at 8 months, 12 months, 2 years. Kids that were diagnosed the same age as Jess. Kids that were diagnosed older. All of these amazing heros who prick their little fingers multiple times a day, endure injections and site changes on their small bodies, brave highs and lows even when some of them are too young to even understand why they feel this way. They are not without fear or anger. But they are resilient and brave, and above all else they are kids.

I met adults living with Type 1 who were inspiring. They give me hope. They comfort Sean who has lived his life with Type 1 in relative isolation. Getting diagnosed at almost 18 has its own pitfalls...he didn't have the chance as a child to be connected into the Type 1 community. There were so many awe inspiring adults with Type 1....it was humbling to be around them and to learn from them. I found myself swallowing tears multiple times as I watched with huge gratitude as they enveloped the Type 1 kids in hope and support. I watched as Sean experienced such comfort talking with them. He thanked me for registering that first night with tears in his eyes...he told me that he knew we did it for Jess, but that he needed it too.

I watched Jessica smile and run with her new buddies. I held back tears of comfort watching her and her friends check their blood sugars together. I laughed as she showed me a friends pump covered in duct tape (the new tween rage-duct tape?!) and tell me she wants to do that too---"Mom, isn't a duct tape pump cool?" I listened in complete shock as she told me "Mom, I might not take the cure if it comes...I actually am ok with diabetes," as she then fled off again with her Type 1 buddies. I watched proudly as she showed other kids her Dexcom...the very gadget that she only months ago refused to wear.

A group of us went to dinner last night...what an amazing experience to be able to say to other parents..."How many carbs do you think are in that?" How comforting to groan with another mom that the night might be rough with the likely highs from eating out. For the first time ever we forgot to bring insulin...how amazing to have another adult Type 1 bring us a bottle, and also a new pump site for Sean to try that she thinks he'll like better.

This morning new friends came down without the mom. "She's still sleeping?" I ask. "Rough blood sugar night" says the dad. Their adorable T1 daughter sits laughing and happy. How comforting to look at them and know exactly what it is like. The exhaustion, the worry, but the pure joy in seeing your happy child un-phased by the rough blood sugar night as they slept soundly while the parents kept watch.

The morning wrap up lecture was incredible. But, it was completely emotionally draining. There were many tears shed as one dad shared his experiences in raising two T1 kids. The fine balance between supporting your child, but yet allowing them to stand on their own. The inspiring slides of all the famous and not so famous type 1 kids that have grown up to do amazing, amazing things. The powerful words he spoke to all the T1 kids as he told them they can do "ANYTHING!"

There were tears shed by Jess when we told her it was time to go. She handed me a stack of papers with all her new friends phone numbers. I watched as they giggled and talked of meeting in Orlando this summer for the Children With Diabetes Friends For Life conference.

So many other huge things happened...we met Kerri Sparling of Six Until Me. My kids adored her, treated her like a celebrity, and asked for her autograph. For me, it was surreal...I have read her blog so much these last two years. Her musings have comforted me, brought me hope, and been refreshing in their honesty. To meet her in person, was truly incredible.

Watching Jessica be in the majority instead of the only kid with diabetes was phenomenal. Here, at this conference, Courtney and I were the minority with our still working pancreases. Yet we were welcomed as part of the Type 1 diabetes family. I watched thankfully as a T1 adult told Courtney that it was ok her pancreas still works, and explained to her that she was something called a T3 and that Type 3's are incredibly important people. I watched as Courtney became fast friends not only with all the type 1 kids but the siblings without diabetes as well.

As we have found with the other family support weekends we have attended...return to the real world is hard. At the conference the food is labeled, and the world is sheltering. We left so incredibly happy that we attended, but also emotionally drained. There is so much intellectual information to absorb, and so many emotions exposed that I find I come home exhausted. I find myself wishing that every one of my patients could find a support group such as Children With Diabetes. We all returned more motivated, and more healed. And, we are already counting down the days to our next Children With Diabetes conference.

Thursday, January 5, 2012

Insight. I'm thankful for it, but it doesn't alone make what happened last night easy to bear. I didn't sleep well and woke thankful that I have a place to air the dirty laundry and hopefully in the process help others to not feel alone.

Jessica was exhausted. Second day back at school after a long, luxuriously unscheduled break. She had a babysitter all night due to really late work meetings for mom and dad. A social studies test tomorrow that she is stressed about. And, then for whatever reason her pump site that had apparently been bothering her all day started to really hurt. The debate...do we change it at 9:30 pm or not? And, as a side note...why in every rare while do these sites start to hurt after only being in a day or two? Scar tissue hitting a nerve??? Anyone know??? At any rate we make the possibly unwise decision to change it. Due to her once again somewhat high numbers I am unsure if it is working well, and figure the last thing we need on a busy school morning is an unexpected site change. Besides, I reason, we've gotten pretty good at quick site changes. We should be able to get a new one in lickity split and get her (and her sister) back to bed which is where they desperately need to be as it is now 9:45 at night. My T1 hubby says he'll do it (thank God) and I jump on the computer for my ever so disliked task of planning tomorrows meals and carbs.

And then I hear it....a blood curdling scream followed by hysterical crying. Apparently, we have hit a nerve. Now, I am sure it hurt. But, in my experience as a mom I have definitely learned that in a over-tired child crying breads more crying. And, in this case a complete breakdown. I know from common sense, and from the absolutely wonderful SETEBAID (we turn diabetes around!) family support weekends, that I need to let her have her emotions and just support her. But, this one was a doozy. She laid pounding her fists screaming "I want the artificial pancreas now." "No, I don't...I don't want anything, I just want a cure" followed by more sobbing and "I know a cure won't come in my lifetime....it is just too hard to do....I mean how will they get my broken pancreas out?" And then she turns to my husband "this is so much harder for me....I got it at seven....you didn't get it until you were seventeen....why did I get it so young???" This followed by even more self pity that as a parent was devastating to watch..."Why me???? Why did it have to be me????" At this point her twin sister who is there also holding her and telling her she loves her bursts out crying. Now, anyone at all insightful would realize that Courtney, being Jessica's twin sister, probably asks herself this on a routine basis. Courtney is now crying. "Jessie....I wish it was me. I wish I could give you my pancreas. I want it to be me." She then declares "Jessie-I know what I will do when I grow up...I am going to find a cure." At this point Sean and I are near tears ourselves. Well, that's a lie. I am in tears. A psychiatrist would just have so much fun analyzing this on so many levels.

We let them cry, telling them we love them. We stress to Jessica that she is not alone. She has so many who love her. I remind her of all those that support Team Jessica through walking with us and contributing. I know from medical school training that you never, ever take away a patient's hope. Sometimes that is all they have. I tell her that scientists are working hard everyday to make better technology and to find a cure. I tell her I know it will happen in her lifetime. I remind her that we don't know why things happen. I remind her of our adorable, beautiful friend who lost his little short life to cancer. It wasn't his fault, just as this isn't hers, just as all the incredibly crappy things that happen to so many are not their faults. I tell her I am sure she will do great, amazing things in life because diabetes has made her stronger. But, I tell her she has every right to feel this way...it is normal...anyone would. But, we will not let diabetes win. She hugs me tight for what seems like forever. As tears stream down my face I pray I am doing this right...being what she needs...saying the right thing. But, I also know there is no "right," and remind myself that 99% of the time she is a well functioning, happy, amazing child. And, I am so thankful she feels safe and can have these kind of breakdowns as I also know they are necessary.

I take Courtney aside. My heart aches for her as much as for Jessica. I tell her what an absolutely amazing sister and daughter she is. I tell her that it is ok she was not the one that got it. It is not her fault. It is nothing she did. None of us know why it was Jessica, but I would never, ever want Courtney to have it. I tell Courtney that she must follow her dreams. I tell her that the way to support Jessica is not to dedicate her life's work to finding a cure if it is not her passion, but to always support Jessica, which is exactly what she is doing. She, too, gives me a huge hug. And, I again try to remind myself that I have to believe she will be ok. And, I remind myself just as these events are Jessica's life story, they are also Courtney's. These events will shape both of them, help them to be resilient, and make them who they will become.

We finally get them to bed at 11 pm. I give my wonderful husband a huge hug. I tell him that as absolutely heart wrenching this evening was for me, I know it was worse for him. I remind him it is not his fault. Just shitty genes, and whatever environmental factor triggered them. I remind him what a wonderful role model he is for her. He doesn't say much...he is always the picture of quite strength. I can only imagine what is going through his mind. I tell him I love him and we will get through this together, just like we do everything.

I remind myself that things could be so much worse. Insulin exists. We can afford it. She doesn't have cancer. We have such great support from family and friends. I allow myself a few minutes of self pity in the shower. I feel alone. I am so tired of it. I'm tired of not being able to get her numbers under control as she seems to be hitting growth spurt after growth spurt. I'm tired of feeling it is my fault I can't. I know I am smart...shouldn't I be able to control these ridiculous numbers. I am tired of picturing her sticky red blood cells and worrying that they are already causing damage. I'm tired of worrying about the emotional impact this hated disease is having on my whole family. I'm tired of it taking so much of our strength, time, money.

But, I dry my tears, We will march on. We will not let diabetes win. I remind myself of all we are doing. I remind myself that life is full of ups and downs, but that it remains beautiful. I remind myself we are not alone. We have so many who love and support us, and for that I will always be incredibly thankful. I feel so thankful we have a Children with Diabetes weekend coming up in February. I will register for the next one in June. I feel thankful I realized this week that Jessica can take Courtney with her to Clara Barton camp. She has refused to go to camp as she doesn't want to go without her sister. Thank God Clara Barton has been wise enough to realize that siblings are a part of the team. I decide I will email her wonderful healthcare provider and ask for help instead of waiting until the next appointment. I remind myself that diabetes has made my family so much closer and made me a better doctor.

I remind myself that to fully enjoy and appreciate the good in life, we must deal with the bad and ugly too.